“Finding happiness in the darkest of places”

My EDS journey is overcome with grief, pain and great sadness, but it has also given me more that I could have possibly imagined; a resilience that would keep me smiling through the unimaginable, a new found appreciation for the days my body allows me to do what I love and a compassion that’s allowed me to support so many through their own journeys.

 

My name is Millie, I love to dance, it will always be my first love, my escape from reality, my coping mechanism. I find joy in the simplest of things; pretty flowers, sunrise/sunset, cute animals (especially dogs), all things Disney and discovering the world around me. I find peace feeling small and insignificant in the big wide world. I guess it makes the problems I suffer with feel that little bit smaller, especially on days when it feels like my illness has overtaken my whole life.

 

I spent years training full-time at two of the most prestigious dance colleges in the country, surrounded by wonderfully likeminded people, all with the same dream. As a dancer, we are brought up to think that pain is progress, if you aren’t exhausted you aren’t doing it right and that holidays are to recover from burn out/injuries - so I had no suspicion that what I was feeling wasn’t “normal”. It wasn’t until I woke up in resus following a ballet class that I realised something was really wrong. I desperately tried to continue my training, enjoying every single second whilst terrified that it could would be my last. But after dozens of hospital admissions far away from my family and major operations leaving me lifeless in intensive care for weeks, my hopes and dreams shattered right in front of me.

 

After years of feeling uniquely broken in every way of the word, I was diagnosed with EDS and it all made sense. The dozens of hospital admissions due to medical complications, the endless nights in agony and loosing so much weight I was forced to rely on feeding tubes and central lines for enteral/parental nutrition. My EDS diagnosis opened up a whole new world full of answers and co-morbidity diagnosis’ such as PoTS, Gastroparesis and Intestinal dysfunction.

 

I’m on the endless journey of accepting life with multiple chronic health conditions, constantly grieving the life I always dreamed of before becoming unwell, let alone the life I would do anything to now have. A life free from debilitating symptoms, medical tubes, hospital stays and the endless suffering just to get through the bad days. A pain free life where I could simply walk out the door in the morning without the literal weight off medical supplies and feed/feeding pumps in a bag I am always connected to.

 

But I am also so very grateful. Grateful that I can truly appreciate the times when I am able to go outside, dance to my heart’s content and to be a part of the world instead of watching it though a hospital window. I think it really does take loosing it all to be able to find true happiness in the darkest places.

 

I may not be living the life I always dreamed of, but I’m determined to still make it a life worth living.

Click here to view the article published by The Ehlers-Danlos Society on 30/11/2023.